A definition of MYALGIC ENCEPHALOMYELITIS:

This is what I have, without a shadow of a doubt in my mind, and I no longer need a doctor to stop dancing around the diagnosis and say it to me. My symptoms are too black and white. 99 of my symptoms could be many conditions and 1 of my symptoms ~ the biggest, baddest one ~ can be only one condition that I know of and that is myalgic encephalomyelitis. Taken from: http://www.name-us.org/DefintionsPages/DefRamsay.htm (I have bolded the important points to my case)

MYALGIC ENCEPHALOMYELITIS:

A Baffling Syndrome With a Tragic Aftermath

by A. Melvin Ramsay M.D., Hon Consultant Physician
Infectious Diseases Dept., Royal Free Hospital
(Pub. 1986)

The syndrome which is currently known as Myalgic Encephalomyelitis in the UK and Epidemic Neuromyasthenia [Chronic Fatigue Syndrome] in the USA leaves a chronic aftermath of debility in a large number of cases. The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.

Although the onset of the disease may be sudden and without apparent cause, as in those whose first intimation of illness is an alarming attack of acute vertigo, there is practically always a history of recent virus infection associated with upper respiratory tract symptoms though occasionally there is gastro-intestinal upset with nausea and vomiting. Instead of making a normal recovery, the patient is dogged by persistent profound fatigue accompanied by a medley of symptoms such as headache, attacks of giddiness, neck pain, muscle weakness, parasthesiae, frequency of micturition or retention, blurred vision and/or diplopia and a general sense of ‘feeling awful’. Many patients report the occurence of fainting attacks which abate after a small meal or even a biscuit, and in an outbreak in Finchley, London, in 1964 three patients were admitted to hospital in an unconscious state presumably as a result of acute hypoglycaemia. There is usually a low-grade pyrexia [fever] which quickly subsides. Respiratory symptoms such as sore throat tend to persist or recur at intervals. Routine physical examination and the ordinary run of laboratory investigations usually prove negative and the patient is then often referred for psychiatric opinion. In my experience this seldom proves helpful is often harmful; it is a fact that a few psychiatrists have referred the patient back with a note saying ‘this patient’s problem does not come within my field’. Nevertheless, by this time the unfortunate patient has acquired the label of ‘neurosis’ or ‘personality disorder’ and may be regarded by both doctor and relatives as a chronic nuisance. We have records of three patients in whom the disbelief of their doctors and relatives led to suicide; one of these was a young man of 22 years of age.

The too facile assumption that such an entity – despite a long series of cases extending over several decades – can be attributed to psychological stress is simply untenable. Although the aetiological factor or factors have yet to be established, there are good grounds for postulating that persistent virus infection could be responsible. It is fully accepted that viruses such as herpes simplex and varicella-zoster remain in the tissues from the time of the initial invasion and can be isolated from nerve ganglia post-mortem; to these may be added measles virus, the persistence of which is responsible for subacute sclerosing panencephalitis that may appear several years after the attack and there is a considerable body of circumstantial evidence associating the virus with multiple sclerosis. There should surely be no difficulty in considering the possibility that other viruses may also persist in the tissues. In recent years routine antibody tests on patients suffering from myalgic encephalomyelitis have shown raised titres to Cocksackie B Group viruses. It is fully established that these viruses are the aetiological agents of ‘Epidemic Myalgia’ or ‘Bornholm’s Disease’ and that, together with ECHO viruses, they comprise the commonest known virus invaders of the central nervous system. This must not be taken to imply that Cocksackie viruses are the sole agents of myalgic encephalo- myelitis since eny generalised virus infection may be followed by a period of post-viral debility. Indeed, the particular invading microbial agent is probably not the most important factor. Recent work suggests that the key to the problem is likely to be found in the abnormal immunological response of the patient to the organism.

A second group of clinical features found in patients suffering from myalgic encephalomyelitis would seem to indicate circulatory disorder. Practically without exception they complain of coldness in the extremities and many are found to have abnormally low temperatures of 94 or 95 degrees F. In a few, these are accompanied by bouts of severe sweating even to the extent of waking during the night lying in a pool of water. A ghostly facial pallor is a well known phenomenom and this has often been detected by relatives some 30 minutes before the patient complains of being ill.

The third component of the diagnostic triad of myalgic encephalo- myelitis relates to cerebral activity. Impairment of memory and inability to concentrate are features in every case. Many report difficulty in saying the right word and are conscious of the fact that they continue to say the wrong one, for example ‘cold’ when they mean ‘hot’. Others find that they start a sentence but cannot complete it, while some others have difficulty compre- hending the written or spoken word. A complaint of acute hyperacusis is not infrequent; this can be quite intolerable but alternates with periods of normal hearing or actual deafness. Vivid dreams generally in colour are reported by persons with no previous experience of such a phenomenom. Emotional lability is often a feature in a person of previous stable person- ality, while sudden bouts of uncontrollable weeping may occur. Impairment of judgement and insight in severe cases completes the ‘encephalitic’ component of the syndrome.

I would like to suggest that in all patients suffering from chronic debility for which a satisfactory explanation is not forthcoming a renewed and much closer appraisal of their symptoms should be made. This applies particularly to the dominant clinical feature of profound fatigue. While it is true that there is considerable variation in degree from one day to the next or from one time of the day to another, nevertheless in those patients whose dynamic or conscientious temperaments urge them to continue effort despite profound malaise or in those who, on the false assumption of ‘neurosis’, have been exhorted to ‘snap out of it’ and ‘take plenty of excercise’ the condition finally results in a state of constant exhaustion. This has been amply borne out by a series of painstaking and meticulous studies carried out by a consultant in physical medicine, himself an ME sufferer for 25 years. These show clearly that recovery of muscle power after exertion is unduly prolonged. After moderate excercise, from which a normal person would recover with nothing more than a good night’s rest, an ME patient will require at least 2 to 3 days while after more strenuous excercise the period can be prolonged to 2 or 3 weeks or more. Moreover, if during this recovery phase, there is a further expenditure of energy the effect is cumulative and this is responsible for the unrelieved sense of exhaustion and depression which characterises the chronic case. The greatest degree of muscle weakness is likely to be found in those muscles which are most in use; thus in right- handed persons the muscles of the left hand and arm are found to be stronger than those on the right. Muscle weakness is almost certainly responsible for the delay in accommodation which gives rise to blurred vision and for the characteristic feature of all chronic cases, namely a proneness to drop articles altogether with clumsiness in performing quite simple manoeuvres; the constant dribbling of saliva which is also a feature of chronic cases is due to weakness of the masseter muscles. In some cases, the myalgic element is obvious but in others a careful palpitation of all muscles will often reveal unsuspected minute foci of acute tenderness; these are to be found particularly in the trapezii, gastrocnemii and abdominal rectii muscles.

The clinical picture of myalgic encephalomyelitis has much in common with that of multiple sclerosis but, unlike the latter, the disease is not progressive and the prognosis should therefore be relatively good. However, this is largely dependent on the management of the patient in the early stages of the illness. Those who are given complete rest from the onset do well and this was illustrated by the aforementioned three patients admitted to hospital in an unconscious state; all three recovered completely. Those whose circumstances make adequate rest periods impossible are at a distinct disadvantage, but no effort should be spared to give them the all-essential basis for successful treatment. Since the limitations which the disease imposes vary considerably from case to case, the responsibility for determining these rests upon the patient. Once these are ascertained the patient is advised to fashion a pattern of living that comes well within them. Any excessive physical or mental stress is likely to precipitate a relapse.

It can be said that a long-term research project into the cause of this disease has been launched and there are good grounds for believing that this will demonstrate beyond doubt that this condition is organically determined.

The only thing that does not pertain to me here is the drooling and the attacks of giddiness, although, that visual coupled with my brother pointing out the awesomeness of a virus called “cocksackie” has me in a fit of giggles, so maybe I do have the giddiness. Giggling while weeping ~ Is this the emotional lability of which they speak?

Also, from the patient guide for ME/CFS that was put together by Stanford University:

While in recovery, please do NOT overexert yourself.

A lot of our patients report that their level of functioning feels like a rollercoaster.  This description shows that the patient is overdoing it, and we believe that this behavior may seriously jeopardize the patient’s potential for a full recovery.  As soon as patients start to feel better, it is natural to want to increase their activity level; however, this is not advisable during the initial recovery process because it will likely lead to a crash. We hypothesize that these crashes, or episodes of heightened fatigue, may have a cumulative effect on a patient’s health, and may compromise the patient’s potential for a full recovery. Imagine that every time you crash, your immune system overreacts as a response (as CFS may be an autoimmune disorder).  As a result, the immune system attacks your body’s own cells in the Central Nervous System (CNS). Once these cells are damaged they may never recover.  Even in the best-case scenario, when the viruses have been successfully treated and kept at bay, the damage that has already been done to the CNS may never be repaired.  This may prevent the patient from fully regaining his or her cognitive and physical capacities.  Theoretically this is how overdoing it and the subsequent crashing may have a long-term negative effect on health. Each patient is unique and should develop a routine level of physical and cognitive functioning that is appropriate for him or her.  Patients should feel like their functioning level is constant from day to day, so that they are not experiencing any crashes.  We feel that only once patients have learned to function under their threshold for crashing have they optimized their treatment plan and their chances for a full recovery.

So, after weeping for three days straight, mourning my old life, here is what I realise: This isn’t going away. I have barely been able to move for three days and today I still feel like shit. My throat is killing me. I can’t push myself to see where my limits are because my limits are much closer than I thought and (what I didn’t know), if I push myself and crash repeatedly, my chances of recovery are not as good. What this week has taught me is that my brain does not do well holding out hope. I cannot and will not think that change is right around the corner because, each time it doesn’t change, I am devastated anew. Every time I have a good day and think, This is it. I’m turning the corner. I’m getting my energy back. This is the beginning of the end… I wind up pushing myself too hard, wind up immobile in indescribable pain, wind up emotionally destroyed, in the darkest of dark places. And that place is blacker and deeper every time I go down there. HOPE is not my friend at all and, the analytical part of my brain finds this very interesting. Who would have thought the very last thing I need is to have hope for what’s around the corner? What I need is to say, Right, this is it. Let’s find a way to accept this and start a different kind of life. There must be others who have an illness and react this way when someone says, “I just know you’ll get better.” I guess that’s why the Good Doctor made a point of saying she will hold hope ~ so I can lose hope and it’s okay.

The upshot of this is:

  • I may not work again. For now, I will move forward assuming that this is going to last forever so I stop looking for my next career.
  • I may not leave this city again. In fact, more importantly, I will move forward under the assumption that I may only leave this house for doctor appointments.
  • I will stop trying to plan lunch dates with friends or buying tickets to shows 6 months away because I hope to be better. I will move forward assuming that I simply am not up to anything and can’t leave the house and will not be getting better.
  • Now that I’m not working, I’ll stop trying to be a housewife. If I can’t do the dishes, the laundry, the cleaning, the cooking, then I won’t. And I won’t feel guilty.
  • I will look for joy and a quality of life in these four walls. I will try to accept that this is my new life, stop mourning my old life, and stop dreaming about my future life.
  • I will accept that I may never find an answer to why this happened and how this happened.
  • I will accept that I may do what I’ve been doing the last few months for the rest of my life. My life may be writing, reading, tv, phone conversations, dog walks (please god) and that’s it.
  • Finally, I will come out of the closet. I have begged those that know about what’s going on with me to keep it quiet. I don’t identify with being sick and I didn’t want anyone to think of me that way. I thought I would quit my job and everything would get better and I could go back to normal life and nobody would really need to know that it was anything more than hard-job-burnout. But, now I will accept that people should probably be told. And I will accept that nobody will understand.

That’s my plan. Can I do it? I don’t know. Will you all do me a favour? Will you please keep reminding me that I can have a happy, good quality of life if I never leave my home? Will you please remind me of the good things and show me pieces of joy where I might not see them? When I get overwhelmed by the Dark Yin, will you say, “Let’s Skype!” or “Go put on some music and move a little” or “Maybe you can play Banangrams with your husband” or “Pretend you’re a monk ~ they do okay in isolation.” I mean it. Sounds crazy, but I’m going to need it. I’m not going to need anyone to tell me how this is going to get better. Just remind me that I’ll be okay right where I am today.

I am grateful for all people ~ family, friends, doctors, researchers ~ that believe beyond a shadow of a doubt that there is this disease that comes out of nowhere and changes lives, even though all current Western medicine tests are normal. I am grateful to all people who understand the depression and anxiety and fear surrounding this illness and don’t think the answer is to treat those things or ~ worse ~ that those things caused this illness. I wish I could put any doubter into my body 2 years ago and into my body now.

…What’s the use in tryin’
All you get is pain
When I needed sunshine I got rain

Yes, I saw her face
Now I’m a believer
There’s not a trace
Of doubt in my mind
Well, I’m a believer

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One thought on “A definition of MYALGIC ENCEPHALOMYELITIS:

  1. […] than just one with epinephrine that’ll keep the anesthetic in my body. Finally, despite my 8 commandments, I am in fear of being home-bound (not homeward-bound, big difference. I wish I was…) for the […]

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